Back in 2011, 8 months after my diagnosis, I volunteered my help in a study undertaken by a university student studying Psychology. His aim was to “investigate the personal coping experiences of individuals with MS…”. His findings revealed “an array of internal and external coping resources from which participants draw strength to accommodate the illness into their lives”. The resources he discussed with myself and the 7 other participants included “religiosity, spirituality, social interaction, cognitive hardiness, self-identity, and self-compassion among others”. Ever the archivist, I do of course have a copy of the entire study.
I’ve decided to post my responses to his interview questions here in the hope that newly diagnosed MSers will benefit from recognising similarities in the way they feel. On a personal level, though, this is a fascinating read – it takes me right back to the mindset I had all those years ago, a mindset that has been through many changes since. I have highlighted in bold the aspects that have most notably shifted.
My feelings on being diagnosed:
I felt a great sense of panic & anxiety, there was a real fear of the unknown. I didn’t know much about MS and in a lot of ways this made me more scared – it seems the more I learn the more I am able to accept things and not freak out! It is very scary to dwell on what may happen in the future and if you’re not well informed your mind can run wild with speculation. For the first 3-4 months after my diagnosis I was scared to talk about what I had, I found it very difficult telling people I had MS and even felt that I wanted to keep it secret. I felt very uneasy at the thought of others talking about it or of being the subject of gossip – because to me this is a huge deal and something that others just can’t understand. It is a life changing condition.
I was definitely in denial for the first few months. I couldn’t accept that I’d have to change what I do and lead a slower pace of life. I’ve always been incredibly active and so was devastated by the news. I had, and still have, a fear of being labelled ‘disabled’. How can someone as young and healthy as me suddenly become disabled over night? Despite feeling scared and anxious I have never felt angry or bitter in any way. In fact I’ve really surprised myself with how positive I am being. My instinct is to fight it and not let it beat me. I feel very lucky in many ways, it almost seems like this is a gift (I wonder if many feel this way?!). I feel that I can see things clearer now, and I have renewed motivation and a sense of direction that I had been lacking in recent years. I have come up with a motto for myself to inspire me when I start to feel low:
An excuse to do More
Not an excuse to do lesS
Hardest aspects to cope with:
One of the hardest things to deal with has been overcoming the intense feeling of loneliness. Until I met others with MS I felt incredibly alone in that no-one, however hard they try, can understand what it’s like to have MS. I don’t look like there is anything wrong with me and, while I’m glad I look ‘normal’, this makes it very hard for anyone to understand that I am not well. Most of the symptoms are invisible, so unless I use my crutches people assume I am fine – often far from the truth! Something I am gradually learning is that MS affects every single aspect of my body and its functions. There isn’t a single part of me that hasn’t been affected in some way, and it is hard accepting that your friends and colleagues can’t understand this – they don’t know the half of it! I keep very quiet about what I am going through and rarely let on that I feel bad or am in pain – I am very aware that people do not want to hear about all my problems – they have problems of their own and it would soon get boring!
I do worry about people’s perceptions of me when I stumble or look unsteady – I worry that people will think I’m drunk (and I don’t even drink!). I have applied for a blue badge and I am concerned that people will judge me and accuse me of parking illegally because I’m young and don’t look disabled.
On the whole I have found my male friends to be more supportive than my female friends. It is very comforting to hear when friends have researched the condition and I really appreciate it when they show an interest in what MS is and how it affects me. A few friends choose to completely ignore the situation, and while they may care they don’t express any interest or concern – this is one of the hardest things to accept.
Apart from close family and friends I have found enormous comfort and support from my MS specialist nurse, who I would be completely lost without. She is there whenever I need her to offer support, advice or just an empathetic ear. She is so knowledgeable about the condition and I feel that I can ask her anything and she’ll be very straight with me, but also very reassuring.
As I said on the phone, I find it is important to keep happy and optimistic. Stress doesn’t help the condition and those who react negatively to the diagnosis often see their MS progress at a faster rate. I try not to dwell on what might happen in the future, although this is not always easy! I certainly have down days, but thankfully these have been few and far between.
Setting physical goals has been vitally important to me and I see a personal trainer once a week to help me to build up strength in my legs so that I may run and cycle again. It is so helpful to have these goals and also a challenge to focus on.
I also find that writing about how I feel is beneficial. By doing this I have a way of venting my feelings and frustrations and can also see how I’ve progressed both emotionally and physically. I keep an organised folder of anything MS related and also keep detailed records of every appointment I have with doctors, nurses, physio etc. As well as this I chart how my condition is progressing, plotting every new symptom as they come. I find this a very useful source so that I can see if patterns form regarding new symptoms and relapses.
I am most worried about ending up in a wheelchair, my independence is so important to me. I dread not being able to exercise / walk. I am also scared of losing my sight; I suffer with Optic Neuritis and so far find this to be the most disabling and scary aspect of my MS.